Re: Have you used this?

[Guest guest]

Gord:

When you say no success with the Coenzyme Q10 and Carnitore, what were you

expecting and how much success were you to see?

Are you on any of the other vitamins some of the doctors recommend? My daughter

Leah is suspected mito and is still being

tested. Possibly Complex I. She is on Vitamin B50, Biotine, Carnitore, CoQ10

(many different brands out there) Vitamin

B1, I also give her Sybrian Gingseng (help with the immune system and stimulate

hungar and growth) And I also have her on

something from Market America called OPC3. Am getting information on this to

pass along. Sometimes you need to give a

product a little more than 3 months to see any change. I know the vitamins

don't help all, but with Leah we do see a

change. When she is sick and in the hospital, we have her off all vitamins. It

seems to take her a little more than a

week once she is back on them to see any change in her energy level. The things

we see with Leah is she is more alert

being on the vitamins and wanting to do games with her brothers. Some days are

better than others. And I understand that

there are different degrees of mito such as we each get the " flu " or " cold "

differently from other people. Leah can't

walk, crawl, but can stand with us holding on to her and leaning up against a

couch or coffee table. She tries to take

steps with us holding on to her. don't give up on hope in trying things.

Different products. So do your research, ask

questions like you are, and ask your doctor about trying different things.

Before we put Leah on the Siberian Gingsing,

and OPC3 we talked it over with our doctor. Good luck with getting your

information and don't worry if it has been

discussed before. There are always new members that need to know this

information and this group is always happy to share

their information with you.

mom to Leah

" Gord V. " wrote:

> Question for all,

>

> Have any of you used the following " natural " products and are their any others

that anyone has tried with any success

> for the control of seizures or for assisting in the activity of the energy

transport chain of mito people.

>

> Coenzyme Q10, Carnatine (I assume most are familiar with this already)

> Been there - done that - 3months no success

>

> True Hope (Em-Power) produced by the Synergy Group. (under study in some

universities)

> www.truehope.com (newsroom)

> We have tried, but did not have any noticeable value after 1+ months

>

> Mannatech (Ambrotose). Immune system support and processing of energy in those

having genetic errors of metabolism

> www.mannatech.com/CAN/PRDWhatDoITakeAmbrotose.asp

> We have not tried

>

> others???

>

> Sorry if this has been discussed before (We're relatively new),

>

> Gord

>

> _________________________________________________________

>

[Guest guest]

Gord, My daughter, who is now four has tried a few of the supplements. She

was started on Carnitor about a year and a half ago. She takes 4cc's 3x's a

day of a 10% solution. She was started on CoQ10 almost a year ago. Her

initial dose was 30mg a day and has since been increased to 90mg a day. She

also just recently started another supplement, DMG. She takes two 125mg tabs

a day.

After introducing each of these supplements, I noticed small increases in her

stamina and she was less lethargic. She would get so lethargic, she would

rather watch me play with her toys than move. Now, she moves her body more

and reaches and touches things within her reach. She is much more animated

and expessive and has more interest in her environment. She used to be very

floppy and could hardly pick her head up. Her neck and trunk control have

gradually increased and she has more tension thruoghout her body. She

tolerates a lot more activity and does much better in her therapy sessions.

Her progress has been very slow, but I do feel that the supplements have been

a lot of help, in combination with other therapies. Her health took a nose

dive in early 2000, but after a g-tube was placed, she has made quite a turn

around. She still picks up colds and bugs quite easily and gets knocked out

for a few days. The CoQ10 and DMG both claim to boost the immune system, so I

hope that is the least improvement I will see.

If you have any more questions, please don't hesitate to ask. I wish you all

the best!

e, Chelsea's mom, (non-specific mito)

[Guest guest]

Hi

What is DMG? How does it help?

graduated from high school 2 weeks ago-over a 4.0 weighed average

and Homebound student of the decade award, Presidential academic award

, National Honor Society and Honor block. We were proud.

He received a standing ovation as we carried him across the stage.

Many people in the audience cried. Our kids touch the souls of many people.After

graduation 90% of the class attended an all night beach blast party

and he hung in there-what fun. Next year he will attend Furman Unmiversity.

This means going down each day, but it's worth it. I hope this

encourages others who are battling mito problems. Hang in there!

Lonnie

jayvelde@... wrote:

Gord, My daughter, who is now four has

tried a few of the supplements. She

was started on Carnitor about a year and a half ago. She takes

4cc's 3x's a

day of a 10% solution. She was started on CoQ10 almost a

year ago. Her

initial dose was 30mg a day and has since been increased to 90mg

a day. She

also just recently started another supplement, DMG. She takes

two 125mg tabs

a day.

After introducing each of these supplements, I noticed small increases

in her

stamina and she was less lethargic. She would get so lethargic,

she would

rather watch me play with her toys than move. Now, she moves her

body more

and reaches and touches things within her reach. She is much more

animated

and expessive and has more interest in her environment. She used

to be very

floppy and could hardly pick her head up. Her neck and trunk control

have

gradually increased and she has more tension thruoghout her body.

She

tolerates a lot more activity and does much better in her therapy

sessions.

Her progress has been very slow, but I do feel that the supplements

have been

a lot of help, in combination with other therapies. Her health

took a nose

dive in early 2000, but after a g-tube was placed, she has made

quite a turn

around. She still picks up colds and bugs quite easily and gets

knocked out

for a few days. The CoQ10 and DMG both claim to boost the immune

system, so I

hope that is the least improvement I will see.

If you have any more questions, please don't hesitate to ask. I

wish you all

the best!

e, Chelsea's mom, (non-specific mito)

http://www.umdf.org/support/listpolicy.html

- please contact mito-owner with any problems or questions.

[Guest guest]

Lonnie : Pass this wisdom onto please:

Way to go ! Sounds like you worked hard and succeeded.

Just remember - college parties are tougher than an all-night beach bash for high school grad. Dont stretch yourself too thin - and sorority girls aren't all they're cracked up to be.

PS - For you list members that are new - I know I've been silent for quite some time - but please understand that in posts like these, I am just kidding around. This disease is way too serious to spend ALL of our time talking about coQ and PT. relax a little. The kid just survived his first all-night beach party.., I for one, hope he sees many more. Good luck !

Jim

Re: Have you used this?

<SNIP>He received a standing ovation as we carried him across the stage. Many people in the audience cried. <SNIP>

[Guest guest]

Lonnie:

I got tears in my eyes reading about your son. And to receive

a standing ovation as he was being carried across the stage. It shows

people care and I hope understand. This gives us hope. You

never know what is completely going on in a mind of a mito child.

What they are observing, taking in, tucking away. And to travel to

the University each and every day. Many people may not understand

it, but we do. We do many things for our children to succeed.

Congratulations on a job well done in parenting and encouragement and to

let your son do the best he can.

mom to Leah

DWalters wrote:

Hi

What is DMG? How does it help?

graduated from high school 2 weeks ago-over a 4.0 weighed average

and Homebound student of the decade award, Presidential academic award

, National Honor Society and Honor block. We were proud.

He received a standing ovation as we carried him across the stage.

Many people in the audience cried. Our kids touch the souls of many people.After

graduation 90% of the class attended an all night beach blast party

and he hung in there-what fun. Next year he will attend Furman Unmiversity.

This means going down each day, but it's worth it. I hope this

encourages others who are battling mito problems. Hang in there!

Lonnie

jayvelde@... wrote:

Gord, My daughter, who is now four has

tried a few of the supplements. She

was started on Carnitor about a year and a half ago. She takes

4cc's 3x's a

day of a 10% solution. She was started on CoQ10 almost a

year ago. Her

initial dose was 30mg a day and has since been increased to 90mg

a day. She

also just recently started another supplement, DMG. She takes

two 125mg tabs

a day.

After introducing each of these supplements, I noticed small increases

in her

stamina and she was less lethargic. She would get so lethargic,

she would

rather watch me play with her toys than move. Now, she moves her

body more

and reaches and touches things within her reach. She is much more

animated

and expessive and has more interest in her environment. She used

to be very

floppy and could hardly pick her head up. Her neck and trunk control

have

gradually increased and she has more tension thruoghout her body.

She

tolerates a lot more activity and does much better in her therapy

sessions.

Her progress has been very slow, but I do feel that the supplements

have been

a lot of help, in combination with other therapies. Her health

took a nose

dive in early 2000, but after a g-tube was placed, she has made

quite a turn

around. She still picks up colds and bugs quite easily and gets

knocked out

for a few days. The CoQ10 and DMG both claim to boost the immune

system, so I

hope that is the least improvement I will see.

If you have any more questions, please don't hesitate to ask. I

wish you all

the best!

e, Chelsea's mom, (non-specific mito)

http://www.umdf.org/support/listpolicy.html

- please contact mito-owner with any problems or questions.

[Guest guest]

Lonnie, somehow I did not recieve your response in my email box. Fortunatly,

since somebody responded to you, I now have yours. I heard about

DMG(Dimethylglycine) here from Savage's who posted about the benefits in

their son. (They have attached an overview of his progress several times). I

checked out the website they reccomended: www.kirkmanlabs.com The website is

geared toward benefits seen in autistic children, which my daughter is not.

It also said that DMG can boost the immune system and has been proven to

increases physical stamina and athletic performance. DMG is an all natural

food product and a component of our cells. There are no side effects from too

little or too much. It almost seemed too good to be true, and we started her

on it at the end of April. We have seen improvment in her stamina, she also

seems to have more tension thruoghout her body. She has always been a very

slow progressor, so we are jjust taking our time observing the effects.

Chelsea takes two 125mg tabs a day(via g-tube). She is 4 and weighs 37lbs and

is over 40 " . An adult can take 4 to 8 tabs a day, so the dose could be

varied, based on good days and bad days. I found this product at a local

health food store, but it is also available at the above website.

If you would like more info, please don't hesitate to ask. I'm glad to help

anyone anyway I can! =)

e, Chelsea's mom(non-specific mito)

[Guest guest]

Jim:

We need things said like that. I guess that is where my husband

and I are at with Leah. We can't worry so much about her all the

time and let everything else go. We need to think positively.

And I'm glad you can kid. Because that is part of acceptance.

Yes mito takes alot out of us parents, families and the children.

But to hear about someone graduating from school is so hopeful for the

rest of us. May be the sorority girls aren't that great, but wait

till he meets the down to earth girls that are just waiting to help him

out. Good luck again with your future and your parents future,

they are in a sense going to college too, again. And thanks Jim for

the smile.

mom to Leah

Jim P wrote:

Lonnie

: Pass this wisdom onto please: Way

to go ! Sounds like you worked hard and succeeded.Just

remember - college parties are tougher than an all-night beach bash for

high school grad. Dont stretch yourself too thin - and sorority girls aren't

all they're cracked up to be. PS

- For you list members that are new - I know I've been silent for quite

some time - but please understand that in posts like these, I am just kidding

around. This disease is way too serious to spend ALL of our time talking

about coQ and PT. relax a little. The kid just survived his first all-night

beach party.., I for one, hope he sees many more. Good luck ! Jim

Re: Have you used

this?

<SNIP>He received a standing

ovation as we carried him across the stage. Many people in the audience

cried. <SNIP>

http://www.umdf.org/support/listpolicy.html

- please contact mito-owner with any problems or questions.

[Guest guest]

hey - Now I like you but be careful what you say about those sororiety girls. I was a gamma phi beta at Rutgers. At least I think that was my life once upon a time.

One of my young neighbor friends just pledged Gamma phi beta at Creighton where she goes. She came home all excited and wanted to do the secret hand shake with me. Well low and behold I can;t remember that hand shake and she just could not believe that I could have actually forgotten something so important. It made me laugh because I remember being 19 and thinking that this was an all important thing too. My how things have changed. However, I do want you all to know that this sororiety girl is in pre med and her dream in life is to become a biochemical geneticist and find a cure for Zach and Sam. So despite the sororiety status she is one wonderful and awesome girl.

Now aside from the sorority girl stereotype I totally agree with the sentiment that Jim raised! Life has way too many heart aches to not laugh when we get a chance.

And Lonnie - tell that amazing son of yours congratulations !!! What an inspiration

Re: Have you used this?

.. May be the sorority girls aren't that great, but wait till he meets the down to earth girls that are just waiting to help him out.

[Guest guest]

Now Anne:

I guess you can't tell a soroiety girl by knowing a person, now can

you. I guess those movies put all these ideas in a person's head

how a sororiety girl should look and act and be. You are so down

to earth. See, and what you remember at being 19 isn't so important

after all. But it is sorta of funny that a hand shake can be so important

to someone. And what a smart sorority girl you are. I didn't

know you were pre med. How do you do it? I am amazed at what

you do. Well learn that handshake again Anne. Good luck with

your pre med and your dream.

mom to Leah

Anne K Juhlmann wrote:

hey

- Now I like you but be careful what you say about those sororiety

girls. I was a gamma phi beta at Rutgers. At least I think

that was my life once upon a time. One

of my young neighbor friends just pledged Gamma phi beta at Creighton where

she goes. She came home all excited and wanted to do the secret hand

shake with me. Well low and behold I can;t remember that hand shake

and she just could not believe that I could have actually forgotten something

so important. It made me laugh because I remember being 19 and thinking

that this was an all important thing too. My how things have changed.

However, I do want you all to know that this sororiety girl is in pre med

and her dream in life is to become a biochemical geneticist and find a

cure for Zach and Sam. So despite the sororiety status she is one

wonderful and awesome girl. Now

aside from the sorority girl stereotype I totally agree with the sentiment

that Jim raised! Life has way too many heart aches to not laugh when

we get a chance. And

Lonnie - tell that amazing son of yours congratulations !!! What

an inspiration

Re: Have you used

this?

. May be the sorority girls aren't that great, but wait till

he meets the down to earth girls that are just waiting to help him out.

http://www.umdf.org/support/listpolicy.html

- please contact mito-owner with any problems or questions.

[Guest guest]

OH no, no no no - I am not pre med ! I'm not that looney yet (almost though). When I said "this sorority girl is pre-med" I was referring to my neighbor college friend. I'm stressed enough being a mom and working my 10 "official nursing" hours a week at the hospital (as in not my mom nursing hours).

hey do you have internet access at the summer home?

Anne

Re: Have you used this?

Now Anne: I guess you can't tell a soroiety girl by knowing a person, now can you. I guess those movies put all these ideas in a person's head how a sororiety girl should look and act and be. You are so down to earth. See, and what you remember at being 19 isn't so important after all. But it is sorta of funny that a hand shake can be so important to someone. And what a smart sorority girl you are. I didn't know you were pre med. How do you do it? I am amazed at what you do. Well learn that handshake again Anne. Good luck with your pre med and your dream. mom to Leah